"When they all make you feel like a problem girl, remember, you're no problem at all." Rob Thomas, Problem Girl

Wednesday, August 8, 2012

I am deeply disturbed by your gross ignorance and ableism on an
episode of your show, which aired August 7th, 2012. The episode in
question examined the murder of 22 year old Gabriel Philby-Zetsche.
Philby, who had cerebral palsy, was found dead in the apartment he
shared with his mother on July 30th, with stab and bludgeon wounds to
his head, face, and chest.

On your show, you expressed surprise that Philby was not receiving
any sort of government assistance. First of all, it is extremely
insulting that you automatically assumed that Philby could not work and
“should have been receiving….[services] from the government”. Most
disabled people are fully capable of working. Even disabled people who
do not work are not necessarily on government benefits for a variety of
reasons. As anyone who has ever tried to apply for disability benefits
knows, it is a drawn-out process, requiring access to health care,
extensive documentation of disability, which not all people have the
privilege of obtaining. Furthermore, even if the application process is
completed, the Social Security Administration’s definition of
disability is complex, and many people do not get approved for
benefits. It is worth noting, as well, that disabled people face the
same employment barriers as non-disabled people in the current economic
climate.

You also questioned Philby’s “functioning level” and stated that
because he was able to help his mother with the cleaning and do other
domestic tasks, he was not a “burden” on her. This seems to suggest
that more severely disabled people are burdens on their parents or
caregivers, and therefore their murders are somehow justified. This is
not a new phenomenon. In fact, this blog post
by Autistic activist Neurodivergent K includes a (very) incomplete list
of disabled people murdered by family or caregivers. In all of these
cases, comments were made trying to justify the murderer’s actions,
citing the “difficulty” in caring for a disabled child and what
“burdens” they must have been, as if a disabled person is no more than a
heavy package, a weight on someone else’s shoulders. You would never
claim that nondisabled children are burdens on their parents. Why,
then, does the addition of a disability suddenly make them burdens and
less worthy of love and care?

Finally, I am troubled by your choice of language. Throughout the
episode, you repeatedly referred to Philby as “suffering from” and “a
victim of” cerebral palsy. These are phrases designed to evoke sympathy
and pity, things that disabled people neither want nor need. I do not
pity Philby because he was disabled. I pity him because he had a life
that was cruelly cut short. An acceptable alternative would be to
simply say that he “had cerebral palsy”. Philby was not a victim of
cerebral palsy. He was a victim of murder.

I applaud your effort and dedication to shedding light on this
horrific crime. I hope my letter has given you pause and will advise
you on how to proceed on disability matters going forward.

Wednesday, August 1, 2012

When
you first begin having mental health problems, everyone leaps to
recommend counseling. People rush to send you recommendations for
therapists, caring professors include the link and phone number for the
on-campus counseling center in their syllabi.

No one ever tells you what to do when the counseling doesn’t work.
When you end up crying uncontrollably during and after each session.
When you dread your counseling sessions so much that you cancel, because
you’re having a good day and you don’t want all those emotions dredged
up again. When each session only serves to remind you of how utterly
awful your life is.

And that’s where medication comes in. Medication as an option, that
you have to research yourself, because no one ever suggests it. And
there’s this constant current of disappointment just below the surface
when you talk to people about it. They say “Have you tried counseling?”
and then when you inform them that yes, in fact, you have, they assume
you just haven’t tried hard enough. That maybe it was the wrong
counselor, or the wrong type of therapy. They urge you not to be so
hasty, not to let one bad experience taint your vision of therapy. “Go
back!” they say. “Try again!” they say.

Why the hell would I want to go back to a treatment that caused me extreme emotional distress?

It’s because there’s such a stigma against psychiatric medication in
our society. Therapy is accepted, so commonplace it’s almost trendy.
But medication is a no-no, because as soon as you go on medication,
there’s something Wrong with you. You’ve become one of Those People,
those crazy people, who relies on medication to be stable.

“But medication can have side effects!” they say. And true, that is
certainly an issue you have to consider when going on medication. But
it’s like an infected wound. What’s better - poking repeatedly at the
wound so it becomes even more inflamed and infected, or providing
antibiotics, which can have side effects, but will clear up the
infection in the long run?

“It’s all a big hoax!” they say. “Big Pharma and all of that!” Well,
I’m here to tell you that I don’t give a flying fuck about Big Pharma
and whether or not the pharmaceutical industry is looking out for
patients’ best interests. All I know is that medication is the only
thing that made me feel like a human being again. And that is certainly
NOT a hoax.

Then they want to know when you’re getting OFF the medication. Even
doctors will sneak it in, mentioning tapering off as soon as they think
they can get away with it. Forgive me, doctor, but I’m doing so well on
medication. Ever heard the saying “If it ain’t broke, don’t fix it”?
Well, I implore you, please don’t try to fix me, because I don’t need
fixing. I am happy on medication. Happier than I was when I wasn’t on
medication. Why, then, do you seem to want to deny me my happiness?

If I need a little white pill to be stable, so what? If it’s a
crutch for me, so what? It enhances my quality of life, just like my
real, physical crutches do. Would you rather I was curled up in a ball
sobbing all the time, like I was before the medication? That doesn’t
bode well for taxpayers. With medication, I can go out and be a
productive member of society. Isn’t that what society wants from me,
and for that matter, everyone else?

And this, ladies and gentlemen, is why I’m wary of disclosing that I’m on psychiatric medication.

I’m sure you all know by now of my deep, undying love of the Spoon Theory by Christine Miserando.
In recent months and years, I’ve expanded my own, personal definition
and application of the spoon theory to include three parts:physical
spoons, cognitive spoons, and emotional spoons.
Physical spoons: Physical spoons are the spoons used for physical
tasks - walking, standing, writing, carrying something, showering, etc.
As a person with CP, these tasks take a lot more energy than they do
for someone without CP, and therefore I have to be very conscious of my
physical spoon count.

Cognitive spoons: Cognitive spoons are the spoons required to think
and produce a coherent output of words, whether that’s in speech or
writing. Cognitive spoons are required to write long blog posts like
this and organize them in a manner that makes sense, as well as writing
other things like poetry or fiction.

Emotional spoons: Emotional spoons are used up when I’m really,
really feeling something. My mental health issues, anxiety and
depression, both eat up a lot of spoons. Talking to friends who create a
lot of drama also takes up a lot of emotional spoons, spoons which I
can’t always spare.

These three categories of spoons overlap and intersect in a variety
of ways. For instance, speaking verbally takes both physical and
cognitive spoons. It takes cognitive spoons to put together the words I
want in my head and make sure they come out the way I want them to. It
takes physical spoons to make the words come out of my mouth clearly
and without stuttering. And the lower I get on spoons, the harder it is
for me to do these things.

And when I get low on one type of spoon, I tend to borrow spoons from
the other spoon areas. Which means if I’m doing a presentation, I will
do much better if I am able to sit. My thoughts will be clearer and I
will be able to express them better if I am not using up spoons by
standing, a task which is very hard for me to do. There are three types
of spoons, but they are very heavily influenced by each other.

When I say I’m exhausted or out of spoons, I may mean physically. I
may mean cognitively. I may mean emotionally. Or I may mean all
three. Either way, it’s a signal for you to back off and give me some
space to rest my body and brain for awhile. If I don’t want to talk to
you, it’s nothing personal. It just means that I can’t handle the toll
on my spoon count right now.